NEGATIVE — MEDICAL — DISADVANTAGES — RESEARCH 255

LINKS: PROTECTING PRIVACY HURTS RESEARCH

MAYO CLINIC’S STUDY OF MINNESOTA PRIVACY LAW SHOWS PRIVACY LAW STIFLES RESEARCH

Helena Gail Rubinstein, Director of Policy Analysis and Program Development, Group Insurance Commission of the Commonwealth of Massachusetts; "If I Am Only for Myself, What Am I? A Communitarian Look at the Privacy Stalemate," American Journal of Law & Medicine, 1999, 25 Am. J. L. and Med. 203, EE2001-JGM, p.223

The Mayo Clinic studied the effect of changes to Minnesota's privacy law that limit the availability of data for medical research. n169 The Clinic found that women were more likely to refuse authorization than men; persons under the age of sixty were more likely to refuse than older people; and people with certain underlying illnesses, such as mental disorders, breast cancer and reproductive problems, were more likely to refuse authorization. n170 The study concluded that individuals who refused to give authorization were systematically different from others, and their exclusion from research protocols would skew studies. n171 The Mayo Clinic's Melton argues that restrictions in Minnesota's law pose an obvious threat to patient-oriented investigations, such as observational outcome studies based on existing medical record data that require personal identifiers to link initial interventions with ultimate results. n172

MEDICAL RECORD PRIVACY THREATENS MEDICAL RESEARH

Amitai Etzioni USA TODAY January 25, 2000, SECTION: NEWS; Pg. 15A TITLE: Our medical records are about to get more privacy // acs-EE2001

Another feature of the proposed regulations that needs to be recast concerns a problem that often arises when privacy is better protected: It undermines some common good. In this case, medical research is seriously threatened.

The regulations require personal identifiers (names, addresses, phone numbers, Social Security numbers) to be removed from medical data and destroyed "at the earliest opportunity . . . unless there is a health or research justification for retaining the identifiers." If this loophole were to be used frequently, it would subvert the intent of the regulation. If the loophole is ignored and most personal identifiers are destroyed as the regulation requires, it will be impossible to combine new data with most existing data, which are built around such personal identifiers.

PRIVACY CONTROLS MAY HINDER IMPORTANT MEDICAL STUDIES

Sharon Schmickle, Star Tribune (Minneapolis, MN) February 10, 1999, SECTION: Pg. 1A TITLE: A challenge to privacy// acs-EE2001

Scientists themselves disagree over the need for new rules.

The fear for many researchers is that regulators will go so far that they hinder important studies.

"I understand the ethical dilemma," said Dr. Robert Jenkins, a professor of laboratory medicine at Mayo. "We don't want a lot of genetic information floating around out there."

SECRECY IS NOT ALWAYS BAD, BUT IT CAN HURT SCIENTIFIC PROGRESS

ROBERT LEE HOTZ, Los Angeles Times, May 18, 1999, SECTION: Part A; Page 1; TITLE: SECRECY IS OFTEN THE PRICE OF MEDICAL RESEARCH FUNDING// acs-EE2001

"Secrecy is not always bad," said John Deutch, a former director of the CIA. Certainly, the recent furor over the theft of nuclear weapons technology at Los Alamos National Laboratory has underscored the importance of military secrecy to national security. "But it is a major threat to science when it arises and it is antithetical to the purposes of a university," Deutch said.

MORE AND MORE SCIENCE IS BOGGED DOWN BY CONCEPTS OF SECRECY

ROBERT LEE HOTZ, Los Angeles Times, May 18, 1999, SECTION: Part A; Page 1; TITLE: SECRECY IS OFTEN THE PRICE OF MEDICAL RESEARCH FUNDING// acs-EE2001

"The commercialization of science has led to a new regimen of secrecy that is of great concern to the scientific community . . . secrecy of an entirely new scope and scale," said physicist Irving A. Lerch, who is spearheading an effort by the American Assn. for the Advancement of Science to combat the trend.

"It is very troubling," Lerch said.

PRIVACY CONCERNS ARE ERODING MEDICAL ADVANCES

Charles Sykes, Senior Fellow at the Wisconsin Policy Institute, THE END OF PRIVACY, 1999, EE2001 -JGM, p.7

Perhaps even more urgently, concerns over privacy threaten to erode many of the advances in medical science, including those involving genetic therapy. Fearful that certain information could damage their ability to obtain insurance or jobs, patients are already avoiding tests and even doctors altogether.